Recovering from myocarditis

[dg2024]

Ok. My story summarised. I'm 52. Male. Never smoked. Dont drink. Life long sportsman. Last May, hospital with heart issues. After many scans and tests, myocarditis strongly suspected. Ramipril, forxiga, eplerenon, bisoprolol and even marcoumar because of a ventricular clot. Intensive care and general ward for 10 days in total. My ef went to 25% but recovered to 45% 5 weeks later. Then 3months later 47ish. 6months after than which was a few days ago, my ef has gone to the 40 to 45 range. Yes, a slight degrade. My heart stress value (proBNP) has thankfully gone down from 1100 to 500. Normal is less than 150. Hospital rehab completed and I even did 200watts on the ecg stress test bike. Above average for my age.

Ok. The doctor switched out perindopril for entresto the other day. Perindopril had in any case been causing leg vein issues and leg swelling. Now I'm on entresto, the leg swelling has gone. Actually, not because of entresto but rather stopping perindopril. I know I have some leg vein issues which were made worse by perindopril so thankfully the leg swelling was not because of heart. It was asymmetric anyway. Monitor implant shows nothing dangerous after some ventricular tachycardia in the early days of myocarditis.

My question is, has anyone else experienced a speedy recovery in ef, only for it to dip again? Chat gpt tells me that this can be normal especially if the probnp value is good and the ef can indeed increase again. Is an undulating ef normal is what I'm trying to ask here.

As for me, I feel totally fit and I even do fitness classes in the gym without issue. Body pump, circuit training etc. No unusual breathlessness whatsoever. Yes, bisoprolol does suppress my heart rate but I feel fully fit. No dizziness. No chest pain.

What is your ef recovery experience espeically for myocarditis? Has it undulated? Slight degrade before improvement? Good entresto experience? Any leg swelling issues with perindopril?

[PadThaiNoodles]

I don’t think the ways of measuring EF are all that accurate. 25% to 45% is clearly an improvement, but I’d be inclined to describe 47% vs 40-45% as “unchanged” (particularly if they were done by two different technicians).

[dg2024 in reply to PadThaiNoodles]

I think youre right. Espeically since i have had difficulty with perindopril. I've had heavy slightly swollen legs (moreso right). But it was same doctor. Same machine. When I stopped perindopril the swelling went away.

[Blearyeyed]

I wouldn't rely on ChatGPT for the most reliable information on health matters , it can get things wrong for various reasons , but in this case , it is correct there can be a fluctuation in readings , all depends on your activity, general health on the day, and payload / resistance etc., EF readings between 40-47% of therefore much of a muchness , but you would still have had the same improvement in contractibility after myocarditis, which is the important thing.Basically you hadn't had a degrade your readings were basically about the same.

Don't forget to build up your exercise gradually within your comfort zone , don't push beyond it , over exertion will reduce the speed of your recovery. Consistent activity is key , your comfort zone for time and type of exercises expands more smoothly if you don't over step the boundaries.

[dg2024 in reply to Blearyeyed]

Totally agree. I'm aware of chat gpt limitations. But it has been a useful tool to understand things like proBNP and the like. I'm learning as I go. Essentially I feel totally OK. No breathlessness ever. Only that yes my pulse is suppressed from the medication. Very good exercise tolerance. I can do body pump, spinning and other classes without unexpected issues. I'm pinning my hopes on entresto. Thank you for your reply.

[Anon2023]

hi. I was told that there's often discrepancies with EF depending on the technician and type of scan. I have echos where I've been 45% then perfusion scans a week later where I'm 54%. My cardiologist said that EF was just one measure of heart health and that I shouldn't worry about it so much. I know it's easier said than done. Before my heart surgery my EF was 45% and despite being on a raft of meds I was gutted that it wasn't in the normal range. That said, I have no symptoms of heart problems and feel better than I have in years. I think it's all about context.

[dg2024 in reply to Anon2023]

I'm also around 45% and feel totally fine. I would not even know I have an issue. I have high hopes for entresto. My bnp (heart stress) measurement has halved even before starting entresto and my heart rate variability has interestingly increased too. But that is just measured by my galaxy smart watch (not medical grade data). I just need to be a patient patient!

[MikeThePike]

Do you know what caused the myocarditis?